Four out of ten family doctors in Switzerland have dealt with at least one patient who refuses all solid or liquid food in order to die, according to a study. Most doctors have a positive approach to the issue.
The Zurich University of Applied Sciences (ZHAW), in collaboration with the Swiss Medical Association, conducted a representative survey of 750 practising family doctors in Switzerland on the voluntary stopping of eating and drinking (VSED), also called ante-mortem or terminal fasting.
VSED is the act of a person who consciously refuses to eat or drink with the intention of dying. Healthcare professionals are therefore not charged with providing a lethal drug to the patient but rather with caring for and accompanying the patient from the beginning of VSED until her or his death.
The survey found that 81.9% of family physicians knew about VSED and 42.8% had accompanied at least one patient during the process. On average, doctors with experience of VSED had dealt with 11 such cases.
“We didn’t expect such a high number,” says Sabrina Stängle, co-author of the research at ZHAW. She pointed out that Switzerland still lacks a unified practice in this area.
“Family physicians lack sufficient in-depth knowledge to address patients and their relatives in an appropriate manner during the process,” the researchers concluded. “Further training and development of practice recommendations are needed to achieve more standardised accompaniment of VSED”.
In any case, 59% of the doctors questioned saw VSED as a natural death process when overseen by a healthcare professional; 32% defined it as equivalent to passive euthanasia, 5% regarded it as suicide, 2% considered it a self-determined end-of-life decision and 1% as an alternative form of dying. One per cent of physicians said they would classify VSED differently depending on the case, which would also be based on the patients’ motives and physical health.
Almost three-quarters of respondents (73%) said this assistance was compatible with their worldview or religion, 58% with their professional ethics; 24% said it contradicted their ethics and 18% were neutral. Those who have already been confronted with it are generally more favourable.
That said, more than half of the respondents said accompanying a person during VSED was stressful.
Our monthly column addresses the same set of questions regarding advance planning and end-of-life care to a variety of people in our community. Our intention is to generate discussion as well as collect information by exploring this one theme seen through multiple perspectives. Possibly we can develop a vision and next steps for our community!
This month’s interview is with Syd Balows who has lived at The Woods Retirement Community in Little River since 1999. He is active as a real estate broker selling homes only in The Woods. He is a charter member of the Death and Dying Group, which started in 2012 with 15 active members. In the Death and Dying group, there have been eight graduates and they all have received Gold Stars. Our current group ranges in age from 67 to 99 years old.
• In your experience in this community and your profession: What has been successfully advanced planning for?
Taking care of business! The 6 Ps says it all: Prior Planning Prevents Piss Poor Performance.
Our friend Sunny was also a founding member of the Death and Dying Group. She planned her dying process. She used VSED (Voluntary Stopping of Eating and Drinking). I spent time with her every day as she was going through the process of dying. Sunny had a list of 18 people she wanted to call and say goodbye to. I would dial the number and then hand the phone to Sunny. She would say, “Hi, I just called to say goodbye because I’m leaving this planet. You have always been such a kind friend to me.” Often times we were holding hands as the tears flowed as she was saying goodbye to her many friends.
Sunny made previous arrangements with a home funeral facilitator. Sunny had chosen to have a Celebration of Life party in her living room. Her cardboard casket was on a table awaiting decorations and wishes for a safe journey. She had a green burial in Caspar Cemetery.
When you make your own decisions you take the burden away from someone else. Be as detailed as you can be to avoid resentment with family members. Many siblings never talk to each other again because of resentments. Think clearly about what you give your beneficiaries. I have seen the men in the family get the business and the women get the furniture.
• What gaps do you see in advanced planning?
Honesty – being truthful about inheritance. If the dying elder changes their mind about who the family executor will be and doesn’t share that change with the family, the results can be a family breakup.
For example, David was told by his parental unit he would be the executor of their estate. The parental unit changed their minds about which sibling was going to be executor. They chose the oldest daughter, RN Ann, to be executor and daughter, RN Laura, to be co-executor. The parents signed all the right forms to make the change of executors but didn’t tell David that he was relieved of his duties. The elders didn’t want a conflict. He was really pissed!
Laura took care of Mom every weekend for four years. After Laura reached burnout, she asked Ann to become the new caregiver. Ann quit her job at the VA, moved out of her home into a suitable rental on the river and became the POA – power of attorney – for health care until the end of Mom’s life, four years later.
David and his sisters disagreed about whether they were to be paid caregivers for their parents, or if they were supposed to donate their time to the estate as co-executors. Because there was nothing spelled out in the legal documents that addressed these issues, it caused a family conflict.
• What have you seen work about end-of-life care?
Acceptance. Accept the things I can’t change. Change the things I can.
Community works. Like-minded people sharing space as we age “right on schedule.”
“Neighbors helping neighbors.” My dying group has had many graduates. We all got to help each other through the process and that has been great for our group. Get the paperwork done to say what you want it to say. “Say what you mean and mean what you say.”
• What gaps do you see in end of life care?
Our local medical system is not very dependable. The fate of the hospital and its chance of survival is having a huge impact on people moving here and people wanting to move away. We have a rural hospital that, to survive, must have an affiliation with a larger hospital group with deeper pockets. We need to have a Medicare-approved hospice, rather than our previous volunteer hospice. A Medicare hospice will serve the community better.
Real estate sales in The Woods in Little River has decreased because elders do not want to live in a community without medical service and a viable hospital. Election years are always bad for real estate.
Recruiting staff for the hospital is difficult for the same reasons that people do not want to commit to coming here if they do not know if their jobs are permanent. But people who live on the coast accept the fact that they will have less in the way of medical care than someone living in a city and plan accordingly. We know that we have to travel for care.
Elder financial abuse is rampant. I have heard of family caregivers removing jewels, a granddaughter set up a meth lab in an elder’s home, changed bank accounts into her name and brought in friends to live freely. There is no return of funds lost.
Many surviving spouses do not know how to deal with household finances. They need help or to have someone in charge to go through this phase. If the spouse who does know does not share the information, it is almost tragic because you have left that person paralyzed.
• Is there anything else you would like to add?
The aging process takes place every day and is frequently life-altering. It is a loss that you can no longer do today what you could do yesterday and that could be frightening. The quality of life is way more important to me than the quantity of life. Healthy aging requires acceptance of the reality of the living and dying process. Birth and death are the natural evolution of coming and going.
Death isn’t that bad a thing, because afterward there has never ever been even one single complaint.
When she worked on the trading floor of the Chicago Board Options Exchange, long before cellphone calculators, Susan Saran could perform complex math problems in her head. Years later, as one of its top regulators, she was in charge of investigating insider trading deals.
Today, she struggles to remember multiplication tables.
Seven years ago, at age 57, Saran was diagnosed with frontotemporal dementia, a progressive, fatal brain disease. She had started forgetting things, losing focus at the job she’d held for three decades. Then tests revealed the grim diagnosis.
“It was absolutely devastating,” said Saran, 64. “It changed everything. My job ended. I was put out on disability. I was told to establish myself in a community before I was unable to care for myself.”
So Saran uprooted herself. She sold her home in 2015 and found what looked like an ideal place: Kendal at Ithaca, a bucolic retirement community in rural New York whose website promised “comprehensive health care for life.”
And now, she’s fighting with that community over her right to determine how she’ll die ― even though she has made her wishes known in writing. Such a fight could ensnare millions of Americans with dementia in coming years.
In 2018, after two brain hemorrhages, Saran conferred with a lawyer and signed an advance directive for dementia, a controversial new document created by the group End of Life Choices New York that instructs caregivers to withhold hand-feeding and fluids at the end of life to avoid the worst ravages of the disease.
“It’s not something that I am willing to endure,” she said. “I don’t want my life prolonged beyond the point where I’m participating in life.”
But when Saran submitted the document to Kendal at Ithaca, the New York continuing care retirement community where she has spent more than $500,000 to secure her future, officials there said they could not honor her wishes.
In a letter, lawyers told Saran that the center is required by state and federal law to offer regular daily meals, with feeding assistance if necessary.
There’s no provision, the letter said, for “decisions to refuse food and water.”
It’s a cruel quandary for Saran and other Americans who have turned to a crop of dementia directives created in recent years. Even when people document their choices ― while they still have the ability to do so ― there’s no guarantee those instructions will be honored, said Dr. Stanley Terman, a California psychiatrist who advises patients on end-of-life decisions.
“It is, in my opinion, a false sense of security,” Terman said.
That may be especially true for the 2.2 million people who live in long-term care settings in the United States. People with dementia are most likely to die in nursing facilities, according to new research from Duke University and the Veterans Affairs Boston Healthcare System.
“If you’ve got the resources, where you’ve got family and paid caregivers at home, you’re all set,” said Dr. Karl Steinberg, a California geriatrician and hospice physician who has written extensively about dementia directives. If you’re living in a facility, he added, “it’s not going to happen.”
One key question is whether patients with dementia ― or those who fear the disease ― can say in advance that they want oral food and fluids stopped at a certain point, a move that would hasten death through dehydration.
It’s a controversial form of what’s known as VSED ― voluntarily stopping eating and drinking ― a practice among some terminally ill patients who want to end their lives. In those cases, people who still have mental capacity can refuse food and water, resulting in death within about two weeks.
Critics of such documents, however, say they could lead to forced starvation of incapacitated people. The directives may be biased, reflecting a society prejudiced against age, disability and cognitive change, said Dr. James Wright, medical director of three long-term care facilities in Richmond, Va.
He’s the lead author of a recent white paper advising facilities not to honor dementia directives. Based on his years of clinical experience, Wright said many people with dementia become content with their situation, even when they never thought they would be.
“To enforce an advance directive on someone who may have had a complete turnaround on what they think of a life worth living is unethical and immoral,” Wright said.
The dementia directives published in the past few years are aimed at filling what experts say has been a major gap in advance-care planning: the gradual loss of capacity to make decisions about one’s care.
One version, published in 2018 by Dr. Barak Gaster, a professor of medicine at the University of Washington, has been downloaded 130,000 times after it was mentioned in a New York Times story and continues to be retrieved about 500 times per week.
“This is an issue that people have really thought a lot about,” Gaster said. “They worry about it a lot. They’re so eager and excited to have a structured opportunity to make their wishes known.”
Traditional advance directives focus on rare conditions, such as a persistent vegetative state or permanent coma, Gaster said. “And yet the No. 1 reason a person would lose ability is dementia,” he added.
As the U.S. population ages, more people ― and their families ― are grappling with dementia. By 2050, nearly 14 million Americans aged 65 and older may be diagnosed with Alzheimer’s disease.
“We are right now experiencing the very first upswing of the giant wave of dementia that’s heading our way,” Gaster said.
Saran is on the crest of that wave. Divorced, with no close family, she turned to Kendal ― with its 236 independent units and 84-bed health center ― as her final home. During her four years there, she has noticed some decline in her mental clarity.
“Even some of the simplest mathematical problems, like even seven times seven, I can’t think of it now,” Saran said.
Still, she is able to manage her affairs. She cooks her own food and cares for her three cats ― Squeaky, Sweetie and Pirate, a one-eyed tabby. A longtime Buddhist, she often drives to a nearby monastery to practice her faith.
In late summer, Saran invited visitors to her small cottage at Kendal, where tapestries hang on the walls and bookshelves are filled with tomes on religion, death and dying.
“I think I have great capacity,” said Saran, who wears her silver hair long and favors jeans, linen shirts and turquoise jewelry.
She chain-smokes, lighting up the Seneca cigarettes she buys for $3 a pack from a nearby Indian reservation. She thought about quitting but decided it wasn’t worth the effort and continues to indulge her habit. “If you had my diagnosis, wouldn’t you?” she said.
When Saran was hospitalized after her strokes, she suddenly understood what losing her abilities might mean.
“I realized, oh, my God, I might get stuck in a situation where I can’t take any independent action,” she recalled. “I better make sure I have all my paperwork in order.”
She was stunned to learn it might not matter, even after her local lawyer, Chuck Guttman, drafted health care proxy documents and a power of attorney.
“I thought this was it,” she said. “I thought I’d move here and everything was taken care of, everything was settled. And now it’s not.”
Laurie Mante, Kendal’s executive director, declined to comment on Saran’s situation, even when Saran authorized her to do so.
“We recognize the great complexity in balancing our residents’ wishes with what is required of us,” Mante wrote in an email. “We have a dedicated team who works to balance those interests, and, when appropriate, work with our residents and their families to seek alternative paths.”
Saran said no one from Kendal has reached out to discuss an “alternative path.”
Not all dementia directives include instructions about assisted feeding. Gaster said he and his colleagues had “heated conversations” before deciding to leave that issue off their popular document.
Instead, he said, his option helps more people by addressing general goals of care for each stage of the disease. The most important thing, he said, is for people to consider their choices and share their desires with their loved ones.
The debate, Gaster said, boils down to whether assisted feeding is “basic support” or “a medical intervention that can be declined in advance.”
“There’s still a very wide perspective of viewpoints on that,” he said.
Backed by statute and practice, facilities say they are bound to offer food to all residents willing to eat, and to assist with hand-feeding and fluids if a person needs help.
The controversy centers on the definition of those terms.
Wright says late-stage dementia patients who show any interest in food ― a flick of the eyes, grunting or gestures, opening the mouth ― should be fed until they refuse it. Steinberg and others contend the default should be “don’t feed unless they ask for it.”
It’s always going to be “somewhat of a guess,” Wright acknowledged, about whether hand-feeding someone is help ― or force.
“I’ve not seen any guidelines that can faithfully give good, unbiased guidance,” he said. “I feel that I personally can determine when food means something to my patients and when it doesn’t.”
The new crop of dementia directives was inspired, in part, by high-profile cases of dementia patients who were spoon-fed against their apparent wishes. In Oregon and British Columbia, courts ruled that food and water were basic care that could not be withdrawn.
But so far, there’s been no court case that says a clear advance directive for VSED “may or must be honored,” said Thaddeus Mason Pope, a professor at the Mitchell Hamline School of Law who studies end-of-life decisions.
Pope said he has heard of many people who move out ― or their families move them out ― of long-term care facilities to avoid assisted feeding in the last stages of dementia.
Saran has considered that, too.
“I should probably just leave,” she said, although that would mean losing the nonrefundable investment she’s already made. “I think about that every day.”
But then what? Hospice might be a solution, but only if there’s room when she needs it, she said.
Saran said her situation should be viewed as a cautionary tale. She wishes she’d asked more questions, insisted on answers about exactly how she would die once her dementia progressed.
“I didn’t realize I was signing away my right to self-determination,” she said. “I am appalled that my future demented self takes precedence over my competent current self.”
“My mother begged to die,” Diane Rehm writes in the preface of her new book, When My Time Comes: Conversations about Whether Those Who Are Dying Should Have the Right to Determine When Life Should End.
“There was no hope of recovery,” she continues. “There was nothing more they could do to ease her pain or to keep her comfortable. She died suffering.”
Rehm, a beloved National Public Radio talk show host and bestselling author, wondered why she’d had to watch her mother endure the horrific effects of non-alcohol-related cirrhosis for so long, and why she didn’t have the right to choose when she’d had enough.
The subject again became personal in 2014 when her husband of 55 years, John Rehm, decided to end his life when the side effects of Parkinson’s disease became overwhelming. He couldn’t use his hands, could no longer feed himself or use the bathroom on his own, and slept for most of the day.
“Because John could not receive medical aid in dying, he had to starve himself and go without medication for 10 days, until he died,” she relates during a chapter focusing on an interview with palliative care physician, internist and geriatrician Christina Puchalski. “I as his wife could do nothing but watch him suffer.”
Puchalski’s take on Rehm’s story is an interesting one. Although she has plenty of compassion for those who are facing their final journey, she has concern that in states where assisted suicide is legal—like Washington, Oregon, Maine, Vermont, California, New Jersey, and Colorado—people might be too quick to seek medical aid to quicken their deaths. She believes palliative care and hospice care can help with pain and symptom management, and can also be done with dignity.
“Are we giving a message that when you get to that point, there’s not a lot of opportunity for meaning and purpose and joy?” Puchalski asks.
At 83 years old, Rehm is a clear proponent of the right-to-die movement. But in When My Time Comes, she uses her interviewing prowess to explore the topic in ways that go beyond a simple “yes” or “no.” She questions terminal cancer patients—one of whom moved to Oregon so she’d be able to end her life on her own terms—and widowed spouses, doctors, death educators, reverends and Roman Catholic priests, constitutional law professors, attorneys and politicians for their opinions.
It’s heady reading, especially when hearing from those who know they’re running out of time. But it’s also a reminder that life is fleeting, and that it’s better to let your family and loved ones know what you want before its final chapter.
At the end of the book, Rehm even talks to her grandson, asking him to record their conversation on his iPhone for posterity. She then tells him that if she’s terminally ill and there is no reasonable expectation of her recovery from mental or physical disability, to let her die and not be kept alive by artificial means and heroic measures.
During “A Conversation with Diane Rehm” Tues., Feb. 11 at Sehome High School, the retired radio personality will be in conversation with local author Phyllis Shacter, who—like Rehm—watched her spouse choose to die via Voluntary Stopping Eating and Drinking (VSED) rather than live into the late stages of Alzheimer’s. The discussion is sure to be a fascinating one, and may help give attendees a clearer look at the bigger picture.
When Rosemary Bowen hurt her back last fall, she was diagnosed with a spinal compression fracture, a common injury for people with osteoporosis. At 94, the retired school reading specialist was active and socially engaged in her Friendship Heights neighborhood, swimming each day, cooking and cleaning for herself, and participating in walking groups, a book club and a poetry cafe. Doctors assured her that with physical therapy and a back brace, she would probably recover in about three months.
Instead, she announced to her family and friends that she had decided to terminate her life by fasting. After saying her goodbyes, she stopped eating, and in the early morning of the eighth day of her fast, she died in her sleep.
But first, Rosemary asked her daughter, Mary Beth Bowen, to film her fast. The final week of her life is now documented, day by day, in a 16-minute film, which was shown publicly for the first time Saturday at the End of Life Expo hosted by Iona Senior Services in Tenleytown.
It may sound macabre to hold a camera up to a dying woman. But Mary Beth said her mother wanted to spread the word that there was a legal, relatively pain-free way to end one’s life. “She thought that more people should take advantage of it,” she said. “She wanted to show people that it could be peaceful and even joyful.”
Rosemary’s plan didn’t completely surprise her family. She had lived through the Depression, when her father lost his job and moved the family to their grandmother’s farmhouse in Magnolia, Wis. Perhaps because of that experience, she was horrified by the idea of imposing on others, even temporarily, to the point where she would stay in a hotel rather than with family. “For all my life, she used to say, ‘People should row their own boats,’ ” Mary Beth said.
Rosemary had seen friends in their 90s who had slowly declined, and as far back as 1979 she wrote about her aversion to an old age with loved ones “shuffling in and out of rest homes visiting me.” When a friend ended her life by fasting, Rosemary decided someday she would do the same.
“At every family reunion she would talk about it — ‘When I get to the point where I can’t care for myself, then I’m going to hasten my death through fasting,’ ” Mary Beth said. “… She said, ‘Old Eskimos, they would just go off and die,’ and she thought that made so much sense.”
After her injury she spent two weeks at a rehab facility, and her daughters talked her into trying out an assisted-living facility. But she hated that she needed help with basic tasks such as cleaning herself, and after two days there she decided to go through with the fast.
Family members begged her to reconsider. Didn’t she want to see her great-grandchildren start to grow up, Mary Beth asked. One of Rosemary’s daughters said she was hurt that Rosemary would not stick around to see her granddaughter graduate.
But Rosemary was adamant. “She said, ‘I’m sorry, but I have to do what’s right for me,’ ” Mary Beth said.
There is no count of how many people choose this route, but it is gradually entering the public conversation. Radio host Diane Rehm revealed on a 2014 segment that her husband, who had suffered from Parkinson’s disease, had brought about his own death by fasting.
Depending on the person’s health and other circumstances, it can take from a few days to a few weeks before death occurs, according to published studies on the method. Refraining from drinking liquids can significantly hasten the process, as a person can survive for a long time by fasting alone. Proper mouth care is essential for a comfortable death, including keeping the person’s lips moist. Aggressive treatment for pain should also be available.
In a 2015 study, 80 percent of family physicians in the Netherlands who had treated VSED cases said the process had unfolded as the patients wanted; only 2 percent said it hadn’t. The median time until death was seven days. Doctors reported that 14 percent of their patients suffered pain in their final three days, and smaller percentages experienced fatigue, impaired cognitive functioning, delirium, and thirst or dry throat.
The results were similar to that of a 2003 study in which hospice nurses in Oregon were asked if they had treated patients who chose to stop eating and drinking. Eighty-five percent of those patients died within 15 days, and the nurses’ median score for the quality of their deaths, on a scale from 0 (a very bad death) to 9 (a very good death), was 8.
Even so, many advocates for aid-in-dying laws argue that people should not have to draw out their own deaths in such a way. Rehm made that argument vociferously after the death of John Rehm, who chose VSED after his doctor said he couldn’t give him drugs to end his life.
The next step after Rosemary decided she wanted to end her life was getting into a hospice program so she could receive aggressive pain medication and other support during the fast. Although she did not technically qualify for hospice since she didn’t have a terminal illness, an Iona staff member helped find one willing to accept her.
In the days leading up to her fast, Rosemary said goodbye to close friends and family members, and started eating half-size meals. Her last meal, for dinner on Dec. 5, was crab cakes. The next day, she stopped eating — and her daughter started filming.
The first scene shows Rosemary smiling, propped up against a blue satin pillow, her short gray hair framing her face. “I am leaving life with great joy,” she says. “I cannot tell you how content I am and I recommend it highly to do it this way. Be in control. Don’t let people decide anything about you and keep you doing a lot of procedures that are not going to benefit your health at all. Just get on with it and go.”
On Day 3 Rosemary says she feels “Okay. Good. Happy. Relieved.” On Day 4, her voice is still strong, and she has returned from walking down the hall with her walker.
Around then, Rosemary became impatient. She felt fine — too fine — and wondered why death was taking so long. Her daughter pointed out that she was still having small sips of water each day with a pill. So she stopped that, instead relying on tiny wet sponges to hydrate her mouth.
By Day 5, her voice cracks as she reports feeling “weaker, and I’m delighted.”
On Day 6, Mary Beth breaks from her neutral observer role and asks if her mother has any regrets about what she’s doing.
“Absolutely none,” Rosemary says.
“But you know that I would much rather have you live for another year or two,” Mary Beth says.
“Oh God,” her mother says with a grimace.
The film does not skip over difficult parts, including the last day Rosemary is conscious, when her mind starts to wander as her organs shut down, and she slips into a deep sleep.
In the audience at Iona, the film elicited mixed reactions.
Gerry Rebach, a former hospice nurse whose mother hastened her death with a fast that took 21 days, said, “It’s not easy, and this movie made it seem easy. I would hate for it to give false impressions.”
Rebach said she cannot imagine herself following her mother’s example. “I think it takes an incredible act of will to be sentient and be able to do that.”
Jean McNelis, a Friendship Heights resident who was friends with Rosemary for 20 years and watched the film Saturday, said she is in the process of figuring out details of her living will, will, and power of attorney. “I don’t have any opinion formed yet about what I want,” she said. “She gave me things to think about.”
Carol Morgan, 78, of Columbia Heights, was upset by the film. Her mother had also fasted to hasten her death in 2006. “It broke my heart,” Morgan said. “I couldn’t bear to see it. … There’s something in me that rebels against it.”
For Mary Beth, the filming was excruciating. She would mostly hold her tears back when she was with her mother, then burst into sobs in the parking garage.
But she saw how happy Rosemary was with her decision. “I felt so gratified that I was helping her on this journey that she was on,” she said. “We were in it together. We’ve always been close, but we became even closer. We’ve never been closer than that last week.”
In the end, helping her mother end her life felt like a sacrament. And filming it felt empowering. Since Rosemary’s death, several of her mother’s friends have told her they are considering following her example, she said.
When Esther Delaplaine, 95, a friend and neighbor, visited Rosemary during her fast, she said, “I had a chance to tell her … how her manner of going was a guide to me in some future that I would be facing.”
That was what Rosemary was hoping for. In the final scene of the film, she can be heard saying, “I feel so privileged to be exiting life like this, and think of all those people who are wringing their hands and saying ‘If only God would take me,’ and all they need to do is give God a little help by holding back on eating and drinking.”
By then, the bed is empty, the blue satin pillow still on it.
Donna Coffeen remembers hearing about Washington state’s Death with Dignity Act when it passed in 2008.
That legislation allows terminally ill adults who want to end their life ask for lethal doses of medication from a physician.
Eight states, including Oregon, have right-to-die laws.
Coffeen was especially alert to the matter. Her husband, Jon, had been diagnosed with Parkinson’s disease in 2003.
Both Coffeens researched Death with Dignity and were pleased with their findings at first, she recalled.
Parkinson’s is a progressive nervous system disorder that affects movement. The symptoms start gradually, sometimes with a barely noticeable tremor in just one hand. Tremors are common, and so is stiffness or slowing down, according to the Mayo Clinic.
Those issues contributed to why the Death with Dignity act would fail Jon, who could no longer swallow by himself by the time he died last year.
Fatal doses of medication must be self-administered under the law.
Donna, a lifelong educator, wants others to know more about physician-assisted death and what changes would benefit others in her husband’s situation. Particularly in an area like Walla Walla, with fewer health care options, she said.
The Coffeens had been sure of two things for the past several years: Parkinson’s would take Jon’s life too soon, and he didn’t want to end up in a wheelchair or dependent on a caregiver, Donna said.
For better or worse
The couple met while attending Walla Walla University. Their engagement photo, a study of the 1970s in hair and wardrobe, shows two faces glowing with contentment. They married March 19, 1978, in Donna’s hometown of Miles City, Mont.
Jon had arrived in the Walla Walla Valley at age 12, when his family bought 35 acres of farmland along Old Milton Highway, south of College Place. While he and Donna were teaching middle school at Milton Adventist School, Jon built a custom home on a section of that land, Donna said.
“He would get up at 5, come build on this house, teach all day, then build on it at night.”
Jon craved activity. For 41 summers he fished commercially in Alaska. He built fiberglass boats. He loved to hunt and hike and camp. He served with Walla Walla Fire District 4 for more than 20 years, his wife said.
It seemed especially cruel when Jon got the diagnosis of Parkinson’s at age 49. By then, some signs had been present for a few years, such as unexplained fatigue and pain.
The average onset age of the disease is 60, according to Parkinson’s resources.
Donna said Jon was determined to stay healthy as long as possible, despite the diagnosis. Their sons, Phillip and Aaron, were just entering adulthood, and the parents were becoming more free to have adventures.
“He fought as hard as anyone could,” Donna recalled.
“He had nine surgeries in 11 years. He walked every day. He exercised. ”
In 2009, Jon underwent a procedure known as DBS, or deep brain stimulation. A surgeon implants a device similar to a heart pacemaker in the brain. The neurotransmitter delivers electrical stimulation to targeted areas in the brain, blocking the abnormal nerve signals that cause tremors and other Parkinson’s symptoms, said Sherri Woodbridge in writing for Parkinson’s News Today.
Doing so added five or six years of “high quality” life to her husband’s timeline, even letting him captain his fishing boat another three summers, Donna said.
“It brought him back to a level of functioning … But it’s not a cure. The disease will progress past what the surgery will do for you.”
The Coffeen family could tell when Jon’s brain intervention had passed its efficacy. He gave up fishing and firefighting in the same week and eventually began falling at home. The travel they loved stopped. Jon’s exhaustion and pain enveloped everything.
Cannabis use helped a lot. “This was a man who’d never had a drink in his life,” Donna said with a laugh.
Looking back, she could see her husband was beginning to plan for the end of his life.
“I think he wanted to spare me. He didn’t want to use up our money, and he didn’t want to be in a nursing home.”
When Jon began worrying he was developing cognitive issues, “that was his line in the sand,” Donna noted.
Out of options
In September 2018, Jon mowed the lawn one day and entered Providence St. Mary Medical Center for foot surgery the next.
He ended up in rehabilitation care at a nursing home for about 10 days, his son Phillip said.
It was there his dad’s Parkinson’s symptoms worsened, likely from stress, he added.
Those increased symptoms sent Jon back to the hospital, where he spoke little and stopped eating, Donna said.
“‘This Parkinson’s is coming down on me like a freight train, and I won’t be able to make decisions soon,’ he told me. But I thought he was coming home. I bought a wheelchair and a wheelchair lift just a few days before we figured out what he was doing.”
What Jon was doing is called VSED — Voluntary Stopping Eating and Drinking. Because he could no longer effectively swallow, Jon could not drink a fatal potion of prescribed medicine, nor was that allowable at the Catholic-based St. Mary.
He was too sick to go to another hospital, Donna said.
“He was out of options.”
VSED is an intentional decision to stop taking liquids or nutrition. According to the National Institute of Health, some people at the end of their lives choose this over physician-assisted death to give them more time for family interaction and reflection. In a case of terminal illness, VSED is not considered suicide. Some patients side-step the medical system altogether when choosing this action.
Some accounts say fatal dehydration and starvation are a hard way to end life, but that wasn’t their experience, Donna said.
In any case, she’d already agreed to follow Jon’s wishes.
“He told me, ‘Don’t you dare give me water.’ He was worried about delirium but that never happened,” she said.
“It took awhile for my heart to catch up with my brain. But I had no urge to talk him out of VSED. I did some grieving in front of him, but I would never ask him not to.”
Hospital staff knew what was happening when Donna and her sons brought Jon home the day after he began the VSED process, she said.
“No one actively stopped us, but no one could officially help us. It’s a Catholic hospital; we knew it would be that way.”
Few people understand the real loss of Walla Walla General Hospital or limited medical care choices until it comes to times like these, Donna added.
Friends continued to be a constant support, and the family made sure all home visitors were either on board with Jon’s decision or kept their thoughts to themselves.
While most VSED users die in about seven days, Jon took 12, she said, attributing that to his age.
Jon Coffeen died Oct. 7, 2018, surrounded by his family.
Donna said she believes her husband wanted to go while his wife could still have an active life.
“I miss him, but he would not be happy if I quit living life to the fullest … In the last year it was like living with a ghost,” she said.
Advances in medical technology are wonderful, and the Coffeens took advantage of those while it made sense.
“But many people prolong things, too. We were right on the edge of hell.”
She might choose the same, given Jon’s shoes to walk in, Donna added softly.
“Our family considers him a hero for doing this.”
After 40 years of marriage, it’s hard not to feel cheated by Parkinson’s, she said, noting Jon’s parents lived into their 90s.
But Donna is learning to live alone. Toby, the “mostly” shih tzu puppy, joined her not long after Jon died and provides a reason for routine, she said, offering the bouncing, barking dog a few Cheerios during the interview.
“We’re still working on manners.”
At 63, Donna said she’ll retire soon. She believes a mission is ahead for her and suspects it’s bringing awareness of end-of-life matters.
“I strongly feel something needs to be done. I just don’t know the next step yet,” she said.
“Maybe it’s time to take another look at the law.”
For some who are terminally ill, hastening their own death may be the answer.
By Samuel P. Harrington
Four months before he died, my father, a widower of six years and a hospice patient, asked me to discuss techniques for hastening his death, although he did not use that term: “I have lived too long. What can I do?”
He was living in Wisconsin where medical aid-in-dying, which allows terminally ill patients to obtain a lethal dose of medicine from a physician, was not legal. At first, I was afraid that he was asking me, a physician, to go around the law and supply him with a lethal dose of sedatives. Fortunately, he was not. He was dying of lymphoma and geriatric “failure to thrive” (old age), but it was a slow and unpleasant process. What could he do, he wanted to know, to move things along? He was ready
It was Christmas Day and I was cooking a few of my mother’s traditional dishes. Gradually, and recognizing the irony of simultaneously baking his favorite pie, I eased into a conversation about refusing to eat and drink. We had had this conversation in the past and it always ended the same way. Unlike most of my terminally ill patients, my father had not lost his appetite and would not give up the pleasure that food brought him.
The next day, he had come to decision: He would no longer take any medications designed to prolong his life, he announced to his family, caregivers and hospice nurses. These included heart pills, blood pressure pills and electrolyte supplements. He would, however, continue palliative medications, including tranquilizers and pain pills. My father died painlessly exactly four months later from the effects of multiple ministrokes.
According to the Center for Disease Control and Prevention, 90 percent of people over age 65 die of six chronic illnesses (heart failure, cancer, lung disease, stroke, dementia and diabetes). If I am fortunate enough to live to a ripe old age, I expect that I will suffer from one of these illnesses. If treatments are ineffective and a prolonged dying process is intolerable, perhaps I, like my father, will want to hasten my death.
As a doctor, I have found that having a sense of some control at the end can be reassuring to people. Yet it’s not easy — nor should it be — for someone to say, “I’m ready to be done with this,” and then have it be so.
In general, three ways are available where a terminally ill patient can speed up the process of dying without the assistance of someone else. One is by declining (or discontinuing) medical treatments that prolong life without improving the quality of life. Stopping his non-palliative medications was my father’s variation on this theme.
Another approach is to refuse to eat or drink. Known as voluntarily stopping eating and drinking, VSED (pronounced “V-said”) is an effective technique that takes advantage of the natural tendency for the terminally ill to lose their appetite to the disease process. This means that there are minimal hunger pains. Patients die of dehydration, which sounds bad but dehydration, by itself, is a pain-free condition. Most people have easily managed symptoms of thirst that stop as things progress. About 10 percent have significant, hard-to-manage symptoms of thirst. Most people slip into a coma in two to four days and pass away in 10 to 14 days.
The third approach is to take a lethal dose of medication. Medical aid-in-dying is legal in seven states and the District. The vast majority of terminally ill patients who choose to exit life this way slip into a coma in minutes and die painlessly within hours.
Having tended many terminally ill patients, I’ve often wondered what I would do if faced with a prolonged death from a chronic illness. If told I had less than six months to live, I would certainly enter hospice care, where the focus of doctors and other health-care professionals is on preserving quality — not quantity — of life. But then what?
Discontinuing or declining medical treatment includes everything from refusing life support or turning it off after a catastrophic stroke, infection or heart attack to discontinuing a pacemaker, a feeding tube or kidney dialysis.
It can also mean no antibiotics for a pneumonia or bladder infection in a bedbound hospice patient. Comforted by palliative treatments — narcotics and sedatives that induce comfort and sedation — any of these decisions will result in a comparatively comfortable death.
My quandary with this method for hastening death is that it relies on the random development of a disease or complication (stroke, infection or heart attack, for example). It is not a proactive strategy offering a better sense of control.
Medical aid-in-dying is proactive and it is effective. It is an option that I believe people should have available to them. Yet it comes with an unanticipated scheduling complication that gives me pause.
The laws allowing medical aid-in-dying are written to protect chronically ill patients from impulsive decision-making, coercion and premature deaths. Most require that patients themselves initiate the process; be certified by two physicians as terminally ill (defined as a life expectancy of less than six months) and mentally competent (without serious depression); undergo a two-week waiting period between the time of certification and acquisition of the medications; and remain mentally competent and physically capable of self-administration at the time of ingestion.
One woman I interviewed lives in Oregon, where medical aid-in-dying has been available for more that 20 years. Her story epitomized the scheduling conundrum.
When her husband was dying of rapidly progressive cancer, they scheduled a family gathering at which time he planned to take his lethal potion. One week before the event, progressive disease threatened his ability to self-administer the medication and they had to hurriedly reschedule with their children and the end-of-life volunteers who mix the medications and witness the process. One son could not reschedule. The wife felt rushed and disappointed that her son could not make it in time.
That scheduling artifice bothers me and supports the nagging sense of prematurity that I associate with many aid-in-dying deaths.
Yet if I lived in a state where it was available, I would consider it, particularly under two conditions: If I were suffering from poorly controlled pain or if I could not be kept clean because of uncontrollable incontinence. (I have seen this in men and women who have suffered complications from pelvic radiation, surgery or cancer itself.)
For me, under most circumstances, that leaves VSED. It cannot really be premature or impulsive. It accelerates the body’s natural decline. And it takes 48 to 96 hours of self-controlled commitment before the patient slips into a self-propagating coma. It would offer me control and demonstrate to my family that my death is appropriate and appropriately timed.
How I will face the final phase of my life is of course unknowable. But I am sure that a sense of control is the most important attribute of a good death and that advance care planning helps more patients achieve their end-of-life wishes.
I know that I do not want to be a burden on my family. I want my values and my legacy to be affirmed and appreciated. I want to be clean and comfortable. I want to optimize my relationships and bring closure to as many problems as possible. And I want my death to be appropriate in time and place.
To achieve all this requires discussions with doctors, family and friends. It also requires understanding one’s disease and likely prognosis and then deciding when to say “no” to aggressive treatment and when to say “yes” to hospice care.
These are not easy conversations or decisions. Yet to reach the peaceful end that most of us wish for, one might require a plan to hasten the process.